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Saturday, 30 May 2015

For a long time, you see, I've prided myself on not having a lot of truck with it. Fear in general, that is, but more particularly, fear of dying. That's been especially true since I had a near brush with death in 2011 following a brain haemorrhage. I went in to the operating theatre then aware there was a very good chance that I wouldn't wake up again, and I didn't feel in the least bit fearful. Somehow, I felt able to relax into what was happening, trust that whatever happened would be safe and good. When I woke up and discovered I was still alive, it was wonderful; but in a bizarre way, I felt quite smug about the fact that I'd been pretty laid back about the prospect of dying if this had, indeed, been 'my time'. Almost as if this was a sign of some amazing faith I could be proud of - something that made me strong and, yes, 'fearless'. To the point where, I realise, not being afraid has become a real point of pride for me.

And now, nearly 4 years later, the prospect of facing death has arrived again - apparently unrelated to the brain haemorrhage (though I'm not entirely convinced about that - but that's another story and another blog post!) But inevitably, the experience of 2011 has inevitably been part of shaping my reactions to the cancer diagnosis. And the script "I'm someone who's not afraid of dying" was there ready formed in my head - a comfort to cling to, but also, potentially, a point of pride which I could use to beat myself up with if the least inkling of fear began to creep into my mind. There's a fine line between not feeling fear, and condemning fear.

I guess it takes a lot to expose what's really there inside us. Part of the journey this last few weeks has been about realising how 'not feeling fear' - a gift given through experiencing the goodness and kindness of the Love I understand as God - can turn into 'condemning fear' - burdening myself with the need not to be afraid, as if God would be let down by me or disappointed in me if I was.

Which is all, of course, rather silly. Once you're able to look at it properly.

And there has been a lot of time, this time as opposed to in 2011, to look at death properly. I think when the cancer diagnosis came, I flipped into 'I've been here before' mode - "I've had the dress rehearsal, now this is it - I have all the tools for a fearless death ready at my disposal." And initially, it was relatively easy. The on-duty doctors who were landed with the job of giving me my original diagnosis were not oncologists, and the bare facts they were dealing with clearly looked like a pretty swift death sentence to them. I kind of knew what to do with that. Plan my funeral, write everyone a poem, put my affairs in order, and show everyone how brave faith in a God of Love could make you as I prepared to breathe my last. But then . . . but then, the offer of fragile hope was held out. This cancer might not - just might not - be as terminal as we had first thought. There might just be some way of holding it back, even - believe it or not - eradicating it.

Suddenly, I was not about to walk out on to the scaffold saying "It is a far, far better thing that I do now than I have ever done." Instead, I was sitting on death row, not knowing, perhaps for years, when or even whether I'm going to be executed. Cooped up indefinitely as a hostage, to a terrorist who is probably - but not certainly - going to shoot me.

Perhaps it's not so surprising that the wonderful, fragile hope of surviving should take me into a whole new level of encounter with fear.

Ad there have been other factors, too, at work to break down my pride in my own fearlessness. Something happened to my body during the radio-surgery which took my mind into a very dark and scary place. The brain, I suppose, isn't quite like any other organ. If you fire massive amounts of radiation into it it probably isn't very surprising if you end up feeling psychotic for a bit. I didn't even know what I was scared of, but for a few days I knew that fear was the only thing I could feel, and my pride didn't stand a chance.

Fear. I think he is the real name of my uninvited guest, my terrorist intruder. Not cancer. Not death, even. Just fear.

A few weeks ago, I remember writing that I wanted to look at the terrorist; I actually didn't want him to leave before I had received whatever he had to disclose to me.

Today he has given me something precious. The knowledge that to feel fear is not to let anyone down. Least of all the God who is Love. I do not have to be unafraid.

If you're following this blog you may know that I'm trying to write my 'Jesus Novel' at the moment. There is so much to explore in terms of what fear meant in his story; what it means to say " though I walk through the valley of the shadow of death I will fear no evil", that "perfect love casts out fear." Did Jesus feel he couldn't be frightened? Was he frightened? How did he hold the balance - to be set free from fear, and yet not be afraid to be afraid?

Tuesday, 19 May 2015

A fair bit of news to share since the last blog post. Thank you for all your positive encouragement through what has been a difficult phase. While I was to some extent prepared for the possible physical effects of the radiosurgery, I don't think I really had any inkling of what it was likely to do to my mind and emotions to have massive amounts of radiation fired into my brain. That's been something of a roller coaster, so thanks for staying with me through it..

When I last wrote, I was about to go to for a consultation with the surgeon who had agreed to look at operating on the primary tumour in my lung. While part of me was keen to do anything to get the primary cancer removed, I had a number of questions about this. Surgery isn't usually thought to be the best course of action for cancers that have developed secondaries like the ones in my brain; Chemotherapy and Radiotherapy are generally thought to be less invasive and risky, if not necessarily quite so ruthlessly effective. However, by the time I reached the consultation, there was new evidence to factor in to the equation. The biopsy on my lung tumour had been sent off for analysis, and had turned out to be a rare genetic mutation that would respond well to one of the new cancer drugs. This was now being proposed as a better first line of treatment for my lung. If any new secondaries were forming, it would also treat them, unlike the surgical option, and it was less harsh and more effective than chemo. So - I began the first round of treatment last week - one simple pill to take at home daily. Meantime, I have been coming off the steroids which have been used to treat the swelling in my brain. So for the last week it has been the war of the side effects; not quite knowing what is being caused by the cancer drug, and what is being caused by the steroid cold turkey.

I know I'm very sleepy; that my right side is struggling again with numbness and my brain is struggling to find words when I try to write. I know my hair is coming out, and my skin is coming up in a rash. I know my swollen face aches as though it's full of dental anaesthetic that's wearing off. But as yet, no nausea, throwing up or diarrhoea - so it could be a lot worse! And I have had some treats this week to be thankful for. I spent the weekend in the kitchen baking, which was hugely satisfying. I joined in with an Iona Big Sing on Sunday afternoon at church, which was socially pretty tiring but very enjoyable. I had my first 'Keep Fit for Old Gits' class taught by the fabulous Linda Page which felt brilliant. I'm managing to walk the dog most days.

And best of all, now I'm not waiting for surgery, we can begin to plan for the next few weeks and months. A couple of short trips away. The concert we'd booked for my birthday. Treats not just for me but for Mike too, who so deserves a break.

The inside of my brain may well have become a scary place, but the sunlight continues to break in. All in all, the world is still good

Tuesday, 5 May 2015

I wonder if anyone else watched the BBC drama “The C – Word”
on Sunday evening? Mike and I both decided we wanted to in the end, and over
the last 24 hours or so, I’ve found the honesty and rawness of it has been a
huge help for me in unblocking what I most want to express after this last week post - radiosurgery. So after a night of
scribbling at the kitchen table, time for a new post, I think.

It’s been a week when I haven’t really wanted to
communicate, or probably better, when the idea of trying to do so has just felt
overwhelming. This shouldn’t be a big deal, for goodness sake; but I have felt
is as such. After all, I’ve been begging everyone to communicate about what’s
been happening to me since February. What right have I got suddenly to go
silent and hidden on you now?

I think the first thing Lisa Lynch (aka Sheridan Smith)
helped me to realise through “The C – Word” was just how difficult I have been
finding it to deal with what’s happening to my body; how hard it’s becoming to
be ‘seen’ at all over the last few weeks. For her, the nightmare was chemo hair
loss; for me it has been the swelling, bright red steroid face; the dribbling
when I eat or drink; the swollen feet and ankles; the distended, wind – filled stomach.
The extra weight all over. The fact I
can’t stop ramming unnecessary food into myself. It shouldn’t matter but it
does and I hate it. I hate looking at others looking at me, and wondering
whether it’s OK for them, whether the changes in me are making them
uncomfortable.

And I hate the effect this has on those closest to me who
have to manage the space in which we live. Another thing “The C – Word” brought
out so well was the devastating effect of what Lisa was going through on her
husband, suddenly plunged in to the role of carer. I’m not going to write about
Mike or Ellie or anyone else for that matter, it’s not for me to talk for them;
but I’m deeply aware of the cost this places on them, and that adds to the
sense of guilt I feel.

All that has been bubbling under the surface for weeks now,
but what has been particular to this last week since the treatment? The easiest
way to describe it has been an “inability to communicate”; which I suspect most
people have understood as finding difficulty either framing words or typing them
– and this of course is part of the truth. It’s a return to the original
symptoms that alerted me to the brain tumours. But it’s actually something bigger
and more fundamental that that. Put simply and bluntly? I CAN’T STAND BEING
ASKED QUESTIONS.

Questions at the moment just feel too much to process. I
feel responsible for giving answers I can’t work out. I feel like everything
freezes up inside my head. And my emotions don’t do what I expect them to do. I
feel constantly like crying.

It feels a bit like being in a tennis match – a tennis match
I’ve freely chosen to play, I have to say – and then realising I can’t return
anyone’s service. Everyone thinks communicating is about forming words with the
mouth or with letters, but that’s the easy bit. I can just about hold my racquet;
the problem is hitting anything with it. And then I feel furious with everyone’s
questions, and guilt because that’s so unfair and unjustified. I’m sure it ties
in with the thing about being looked at too. I’m used to being able to gently
bat things back to the other person’s court. But when I can’t return the ball,
it just sits at my feet, and all eyes stay on me. It starts to feel as though
nothing is able to function without me. That’s clearly delusional, so it starts
the cycle of guilt all over again. And those who are closest get the worst of the
irritation and bad reaction when they deserve so much better.

At the root of the irritation, I know there’s a concern for
everyone’s kindness and love, which is why I go on and on about it so much I
guess. I feel a huge burden to be sending back constant messages of thanks and
appreciation. That can get exhausting. And if I can’t do it, I feel I should be
chasing Mike & co to do it. I’m always a bit paranoid like this – fed by years
of ministry guilt trips too, of course – but it hits new heights when the
stakes are this high; when the kindness of so many friends is so real and deep
and sacrificial. I so much need you all to know that I know that, and that it’s
not you, any of you, I’m really irritated with. Just as I don’t believe you are really
disappointed in me, which is what I project on to you…

Would I have been able to express anything this negative this
without Sunday night’s drama? I doubt it. Thank you Lisa Lynch, and Sheridan
Smith. And, of course, the BBC.

And as for how am I doing now? Good thanks. A few weeks till
we know how effective brain treatment has been. A couple of days till we meet
Lung specialist to talk about the primary. Everything’s moving forward as fast as it can.